My name is Brooklyn. I am six years old and I have Rett Syndrome. My mommy works with a wonderful Rett Syndrome organization called Girl Power 2 Cure. Be sure to check it out www.girlpower2cure.org
I hope you enjoy this blog...it is filled with stories and pictures of our family's life with Rett Syndrome.

Friday, January 2, 2009

I should warn you I am a bit teary eyed typing this post. I went to our DMV today to get our handicapped parking plaques. (Not something I have been looking forward too )- I carried the paperwork around for about 4 months before even taking it to Brooklyn's doctor.I am not sure what prompted me to go today...... I guess it mainly is because Charlie's back has been causing him A TON of pain lately, he really should not be carrying her at all, but he does because he is so helpful and adores Brooklyn.So, I gave in and got our plaques. I want to say a big "thank you" to the VERY sweet gal who processed our paperwork because I cried. I am sure it is not everyday they have people cry.....except maybe the teens who fail their written drivers test :) She actually has a daughter that is one day younger than Brooklyn - I gave her one of Brooklyn's Rett Syndrome cards (you know me....always looking for a chance to spread awareness!!) It also helped explain my tears :)

Hugs for you today Kelly. I did the same thing if it makes you feel any better - carried that paperwork around for months both before and after the doctor filled it out. Then I refused to use the placard for months after I got it. I always found a way to convince myself there was someone that would need that spot more than us. I'm still pretty selective about when we use it but it doesn't bother me like it used to.

I also carried the paperwork around for awhile before going a few months ago and i sometimes make excuses thinking someone else could use it more than us but i'm getting better about using it. It's just one more of those things we never thought we'd have to do but it is helpful. Both of your backs deserve a break. Sending hugs, i was emotional too!

I let the signed paperwork sit on my desk for a month before sending it in! People had been trying to convince me to get it...Saying it was my "right." Well, it wasn't a right I wanted...Caitlyn made the choice for me...Two things brought me to actually send in the paper work. The first was a trip to Costco when Caitlyn sat down in the middle of the parking lot because she didn't want to walk any further. The second was when I had to toss her across the back seat to get her in the carseat because someone had parked too close!

I'm so sorry you had to go through this alone. I'm not sure if I would have made it in...All I had to do was mail it! Like Kim, I make excuses to not use the spot, then yell at myself inside when I can't get Caitlyn in because someone parked to close to her door.

Another thing that Rett Syndrome let's you do...It's just not fair, but we are all in it together!

Kelly, I'm so sorry you had such a hard day yesterday. I wish both of us could have gone with you to get your sticker. I'm so glad you had someone nice to wait on you. Just know that you have tons of relatives and friends who love you all.

Hi Kelly,I'm sure my comments aren't too different than any other feelings the other families dealing with RTT is going through. I too held on to the paperwork for a while and we only use the parking spot when its really cold or raining and we don't want my Kelly outside too long. I do want to say what changed my mind about using it was a friend of mine who said. Kelly (my daughter) will be waiting for things or not doing certain things because of RTT. It will take away from her a lot of what she deserves but..damn it she deserves the best parking space at least.I laughed a little and then started to use the spaces....when they are available. Many times they aren't. good luck and hugs to you...Your friendBeth Breden

Well you inspired me to print out the form so I can take it to Riley's doctor next time I go. It is not something I look forward to either but I know it'll make all our lives easier. :( Hope you are feeling better about it today.

Kelly, I like what beth said! Our girls do deserve the best parking space! :)

Love ya and wish we lived closer...we could have gone together! I have yet to use my permits. I keep thinking the same thing as the others---someone deserves it more. Well not anymore-Avery deserves the best spot!

Oh I so understand how hard that was for you. When I went to get my placard, the man at the DMV was almost in tears! (Myself included) We had used the placard the other day (there were no other spots available) and someone yelled "liars!" when we got to our car! I didn't get a chance to hand out (or throw) a card at them, but decided to let it go (Thank God I wasn't in a foul mood that day :) We think of you guys often. Let's make 2009 the pivotal year that will free our girls from the chains of Rett Syndrome forever.

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